31 December 2015

As the sun sets on the year that's past, especially, there are so many voices telling us that what we're doing isn't enough. I've found this particularly as blogger - not even in December, but all year actually.

In a world where everyone is a diet expert and there are people who call themselves social media gurus but only have a handful of social media followers, it feels like bloggers should be diversifying and value adding, or sink. Maintain your blog but DO MORE to connect with your readers, to reach brands and to boost your SEO. Write a listicle post! Use long tailed keywords! Don't write a long post as your readers won't like it! Become niche! It can be overwhelming. And can leave you feeling like you're not doing it right. (Just quietly, I don't know what a long tailed keyword is, nor am I aware if I've used one, and I'm doing ok!)

As I downloaded yet another interesting podcast, this time about entrepreneurship (it's called Design Life - with episodes about personal branding and side projects), I realised that this year, many things didn't get ticked off my to do list. I sighed, wondering when I will do these things:

Complete my huge writing list

Start a HuffPo profile

Finalise a writing challenge I have planned for the disability blogging community

Write a short eBook

Launch a blogging eCourse (I delivered a mini one last year)

Start a podcast

Complete start my manuscript and refine my manuscript proposal

Do more videos

Pretty up my blog.

It's perfectly fine that I didn't achieve it all. Because what I did achieve in 2015 was huge.

Everything on my to do list is part of my side project. My side project is mostly my writing, which leads to other great things. While I had lofty goals to make it my full time job, I'm not sure that's feasible. My side project makes me very happy (mostly) but it doesn't make me a full time wage. It does supplement my income very nicely and also lets me develop and build on skills, plus meet fabulous people.

As we say hello to a new year, there can be pressure to change, to do things differently. Do more, be better, overhaul yourself, your diet and your career. But why can't what you've done be enough? It's enough for me. And I won't feel guilty for not doing more or being different to what I am.

In 2016 I have no goals. I will just keep writing, keep honing my craft. And I believe that will help me achieve those other goals I didn't tick off my list. I will chip away, continuing to find happiness and help people in my side project.

I wish the same for you. Don't change because someone's telling you to. Don't do something at such force it's no longer fun. Don't beat yourself up for what you haven't achieved - feel good about what you have achieved. Keep doing what you love. Keep being you, because you're great. And if you want to make a change to your life or set a big goal, do it because of your own reasons, not because you felt pressured into it.

24 December 2015

My thoughts about disability website The Mighty have been brewing for some time now. I'm overwhelmed with words as I write this piece. But it's time I addressed this. It's a long post, but I've done my best to clarify my feelings and do some research to back up my claims.

This week, The Mighty published a post which was offensive to many - it was about "meltdown bingo" - making fun of people with autism. A petition was started. The editors removed the post and wrote an apology.

That post was the last straw. The Mighty has been problematic to many for a while - with writers expressing their feelings about it this year. Meriah has written her thoughts here ("The Mighty is disability on click bait", she says) and there's also a great post on 21+21+21. Parts of disability community rallied and broadcast our thoughts about the issues with The Mighty this week. You can see them via the Twitter hashtag #CrippingTheMighty, and a summary of blog posts in a link at the end of this post.

Cripping the Mighty is a movement to take back our voice, to show The Mighty editors and readers many diverse, informed, educated and articulate disabled writers, and to voice our concerns about the website. The Mighty then asked for a conversation. Many writers, including Radical Neurosiverse Speaking thought this consultation with the disability community was too little, too late.

I describe The Mighty as a site about disability, which often has a pity/inspiration-porn/parent focused narrative. Cara describes it as "not-news-news". Yes! Alot of the stories are non news about disability. To my knowledge there are no editors with a disability at The Mighty - but founder and CEO Mike Porath has written about his experience as a parent of disabled children here. Many esteemed writers with disabilities and parents contribute to the site. I'm friends with a few of them.

The Mighty had so much promise but many of us feel parents' stories outshine the stories of people with disabilities. As Leah Kelley writes, the voices of parents and professionals often has more reach and volume than those of patients and people with disabilities. It is more so a website about disability, rather than by people with disability. And so often when disabled people write about their experiences, they're shut down by commenters, or diluted by stories about us. In a call to change The Mighty, Savannah Nicole Logsdon-Breakstone wrote "One specific ask is to increase the percentage of disabled writers so that parents are not the primary voice heard on the site."

I've contributed to The Mighty several times. I've not written anything new for them - just republished blog posts, and it's been unpaid, so it's been all about the (small) exposure. I've also said no to them several times, when they've asked me if I would like my posts republished. I've said no because of lack of payment, my feelings about the content as a whole, and also the knowledge that one of the posts they wanted to publish would no doubt be torn to shreds

Why would I write for a site that I don't fully. agree with in parts? (And am I biting the hand that feeds me? No.) Because I wanted to help change the narrative. I wanted to add to disabled voice, which I believe The Mighty has but lacks. I believe that sharing stories helps others feel less alone, and helps them share theirs. And I admit, it's nice to put another website on my portfolio.

My issues with The Mighty can be broken down into themes: the portrayal (and inclusion) of people with disability, oversharing, lack of payment, contributors community, support from editors amd commenters.

The portrayal (and inclusion) of disability

When I first saw a dedicated platform for stories about disability, I was excited. Since the cessation of Ramp Up, a united platform has been missing. Disability is underrepresented in media.mwe need more voices.

I do enjoy some stories on The Mighty, like this one - addressing disability pride and being called an inspiration for just doing ordinary things. This is a good post too - the writer draws attention to the problem of the supercrip.

But overall, The Mighty features inspiration porn, and many stories are of pity and tragedy from a parent's perspective. There is also a tendency to make heroes of people without disabilities who interact with disabled people. The stories are well intentioned, but could be so much better.

The way we are represented impacts on us. It impacts on our job prospects, relationships, media portrayal, financial support and our self esteem. It impacts on everyone with a disability, and everyone without. Here are some examples of problematic posts:

To the Waitress Who Stepped Out Of Her Comfort Zone for My Son (Here, the mother describes a waitress interacting with her son for a minute while she went to the bathroom as "a once in a lifetime experience". How little faith does she have in people?! Does she think that no one will interact 'normally' with her son, like ever?)

Disability is often portrayed as a burden, with non disabled people taking time out of their busy day to interact with disabled people, and parents sharing stories of the difficulties of parenting children with disabilities and illnesses. (See Girraffe Party's excellent post about this issue.)

It's difficult as a disabled adult to read the raw stuff. To read about the real, valid feelings of grief and cures, and also the oversharing photos, is really tough to see. Did my parents feel this way too?I fully endorse with offline spaces for in depth discussion about medical details.

"Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. The narrative of tragedy surrounding the experience of parenting disabled children has real life consequences for disabled people. If you want to serve our communities, you must not tell our stories without us and with so little respect to us. If you want to help disabled people, learn about ableism, learn about injustice, learn about ways to make the world better, fairer and more inclusive for us."

And S.E Smith also wrote about the issue of The Mighty being a place for parents, specifically how their identities are shaped by their child's diagnosis in this excellent blog post.

Additionally, The Mighty doesn't use alt-text - image descriptions to assist people with various disabilities make sense of pictures. Another way they're excluding people with disabilities.

However, I also think everyone is entitled to their stories, and a parent's experience is valid and needs to be vocalised too. But never at the expense of dignity or privacy,

I've written a lot about my views on parents oversharing about their children's conditions, but to summarise: for parents blogging/ sharing information/seeking advice about their kids online - my view is, do it but show some caution. If you wouldn't like that written about you online, then don't write about your kids in that way. It's too easy to ask a question in a Facebook group or to put up a photo of a child's rash filled bottom in desperation. Don't share pictures of them in vulnerable situations (naked, in pain, private ones). Keep the privacy and dignity. Blogging creates support and connectedness and is valuable for everyone.

I never want to silence anyone's voices. But if you're "being the voice" of someone else, consider what and how much you share.

Lack of payment

The Mighty contributors do not get paid. People with disabilities have a lower income than those without. Unemployment is high, and opportunities can be low due to low expectations of people with disabilities. Parents who care for their disabled or chronically ill children may not be able to work. Most stories are about lived experience. So contributors should be paid fairly for their contribution.

I was asked to cross post my Mighty articles on Yahoo. I declined, because of the lack of payment for my lived disability experience, writing achievements and qualifications. Yahoo is a huge company and I am not. Its projected earnings in 2015 was $950 million.

The Mighty and Yahoo needs to value its contributors more by paying us. Even hire a disabled editor.

The Mighty contributors community

Mighty Writers have access to a closed Mighty Facebook group. Generally the group has been quite supportive and well behaved. It hasn't been pretty over the past few days though, with bickering between parents and adults with disabilities wanting to have their voices heard.

Many were angry about Cripping the Mighty, suggesting it's just a small handful of people with too much time on their hands shouting and spouting hate speech. Some have been extremely aggressive, but others have been lovely, open to different views, assertive about our education and experience, and very supportive.

I feel like some parents and disabled adults are missing our point - some don't think ableism exists, others don't like the term inspiration porn and a few think The Mighty should be segregated between adults with disabilities and caregivers. One writer has told me (outside of the group) she thinks autism and Down syndrome gets too much coverage and rare conditions should get more. There is a definite sense of hierarchy in the writers community.

Many are saying they are the only voice for their child and have a right to share their child's story, not understanding the impacts of oversharing and loss of privacy and dignity. (I was attacked by a Mighty contributor on my personal Facebook page for raising this specific issue. She said I'm not a parent, so can't comment, blah blah. Friends had my back. Thankful.)

I shared a couple of my blog posts and also my point of view on parents blogging about disabilities with the group. They've been welcomed. I got a few lovely comments which have been nice. I've since connected with some lovely people. They've asked me to review their articles - which have been fantastic. Considerate, compassionate and concerned about the portrayal of their children.

A friend with a disability left the group, feeling chased out by angry parents. Another said her anxiety was heightened by the arguments there, and she needed time out. And someone else (a parent, very considerate of how she portrays her child and his autism online) told me she was being called mentally ill in a derogatory way by another parent and has been upset. She told me "I am a stranger [to her] and she has no knowledge of me nor my mental health..this was astonishing and troubling."

You can read more of my experience as a contributor in the group on Disability Voices (log into Facebook to read it).

Today I was warned by The Mighty editor for sharing quotes directed at me, and my own quotes outside of the Facebook group. I will not have my experiences silenced.

Support from the editors

While the editors have tried to foster a community, I am not sure of the level of guidance (if any) they provide their writers. I don't mean editorial guidance, but the emotional support that is so important in handling the feedback that comes with writing online. Years of blogging, and having close support networks has made me fairly resilient. And I hope The Mighty writers have got the same.

In the case of The Mighty's content, it's not the writers we should direct all of our anger at. The writer of the meltdown bingo point might not have made the wisest decision publishing it on such a large reaching website, but they're her thoughts. We should expect more from the editors. I really think vulnerable people (perhaps inexperienced, unprepared writers who have a lot going on with their/their child's illness or disability) who want their stories to be read submit to The Mighty, unaware of the reach and reactions to their articles. Being published (and subsequent fame) is a great achievement and can be addictive. The editors want to curate a certain narrative, and so use clickbait headings and unconsidered content on their site.

The editors might well be throwing inexperienced writers under a bus - intentionally or not. The writer of the bingo post was very upset this week. I wonder if the editors gave her a debriefing or prepared her for a backlash?

From my experience in The Mighty Facebook group these past few days, I'd say the editors haven't given contributors much support. They admitted to it too, in light of the response to meltdown bingo and Cripping the Mighty. They've let attacks happen. So I doubt they prepare contributors for a backlash. That's why I didn't want them to republish my post about parents oversharing. I didn't want to be ripped to shreds for free.

They might be doing their best, but with their resumes (their About Us section says the editors have a background of "The New York Times, ABC News, NBC News, MSNBC, MTV, AOL, The Huffington Post") I'm not sure how equipped they are with guiding more vulnerable writers who focus on disability and chronic illness.

Commenters

Many commenters on The Mighty posts are either inspired or angry. I believe they too are problematic in relation to the portrayal of disability - mostly due to their low expectations and demands for the disabled writers to be teachable moments.

When an article about a disability centred sex party was published in August, readers were outraged. Readers dismissed the sex lives of disabled people - completely grossed out.

The comments were terrible - they show what I've been thinking for a while - readers lap up inspiration porn and cannot deal with learning about the real lives of people with disabilities. Disabled people have sex too! An example:

"So sad! I'm unfollowing the Mighty now. This is obviously not protecting and advocating for people with disabilities. I've often times been so thrilled to share what you guys post, but am so sad and grossed out. There should be people that love these individuals who teach them about sex, not having a perverted party. I'm so sickened by this. We're supposed to encourage, lift up, help them succeed, and most of all watch out for them. These people are preying on them. If so, I hope justice is served and light is shone on the dark places. Jason, Sandra, please read and share to unlike them. People with disabilities naturally feel hurt and rejected and want to be a part of something fun! If course they'll come to your gross party! I could have a much better party for them."

Karin, who wrote a great piece about not wanting to be called inspirational, was cut down by commenters. "People get angry when disabled people don't want to constantly educate on disability, but don't listen to us when we do #CrippingTheMighty", she tweeted. So true.

It is great this platform dedicated to disability exists, but I think it could be much better. I've got some suggestions for The Mighty, it's contributors and readers, which I hope will be considered. I'm hopeful of a change - I think the editors are listening and some of the parent contributors are really valuing what disabled writers have to say.

To the Mighty editors:

I know you will be reading this. Listen to us.

Pay writers. Support writers in the face of critical comments - arm us with resilience.

Implement a peer review program - as suggested by a contributor. Get an adult with a disability to review a post from a parent when unsure of how it will, be received.

Consider how disability is portrayed, and make disability the centre story (stop praising a person without a disability for being heroic for engaging with a disabled person).

Share inspiring stories but make sure the subjects are actually doing inspiring things, not every day things like getting out of bed.

Consider the impact a story will have on the wider disability community.

Remember the "nothing about us without us" mantra and follow that along with your motto: "We face disability, disease and mental illness together."

To The Mighty contributors:

We aren't the enemy. We aren't spouting hate or silencing you.

I am listening to you, seeing your struggles and admire the great job you're doing.

I understand how uplifting stories inspire you and often give you hope for your children. But please consume the stories about ableism, discrimination and why we don't want to be a teaching moment, too. Not all stories about disability are positive and uplifting, because life with a disability isn't always great.

I ask that you consider the level of detail you share about your child's condition by thinking how you'd like to be written about on the internet. Consider the impact your stories will have on the wider disability community, on your child even. Be mindful of public grief.

22 December 2015

My family doesn't do a big Christmas. It's always simple presents, good food, and in recent years, a sleep in and then volunteering at a community Christmas. I do love giving gifts, and have chosen some exciting ones for loved ones this year. I can't wait to see reactions as presents are unwrapped on Christmas afternoon.

For me, Christmas is about being with family and friends, laughter and love. And you can give meaningful gifts without breaking the bank. A good Christmas doesn't have to be extravagant. Here are five Christmas gifts from the heart, not (all) from the wallet. I think recipients will love them!

Something handmade.

A pot of jam, some cookies, a knitted scarf, a framed painting, a piece of jewellery, a felted soft toy... Handmade gifts are wonderful and I love them. Pop over to Etsy to support some local makers, or make something yourself to give away. Pip's always got great ideas for handmade goodies too.

A family recipe.

Write down your favourite recipe and give it to a friend or family member. Maybe you can preface it with a little story of your memories of cooking or eating this. You could make it really special by collating a few recipes and using a program like Canva to design a mini cookbook.

I've got great memories of food as I grew up. Mum always made food go a long way - using cheap cuts of meats for stews, making her own pastries and using chilli in almost everything! I really enjoyed her lamb peas and carrots breedie (a South African stew), and want to ask her for the recipe this Christmas, so I can make it myself. Maybe I'll show her how to make something I cook a lot too.

A list of the recipient's achievements to remind them they're spectacular.

Write a letter to a friend or family member, listing their achievements in the past year. Showing them that even the small things they did had an impact will make them smile, I'm sure.

So many people in my life have achieved amazing things this year. I'm especially proud of Adam for starting his handyman business, acquiring many clients and making more money in three months than he thought he would in a year. His drive and commitment to this small business has been incredible. I'm seeing a different person. I want to keep reminding him of his achievements to lift him up. He's done so well.

A packet of seeds or a cutting from your garden.

Give a friend a packet of seeds to plant. During the year, they'll have flowers to admire or vegetables to pick. Or deliver them a cutting from your garden. My Dad has a cactus he got from our neighbour in 1983, and it's still flowering. He continues to give cuttings to his friends.

A good deed for someone in need.

Christmas can be tough for many. Make someone else happy on Christmas Day. Volunteer at a community Christmas, or place a present under the wishing tree. From experience, presents are often lacking for older teenagers - so make sure you think of them too. And a phone call or hug doesn't go astray - let someone know you're thinking of them.

I wrote this for a website a couple of years ago and want to republish it here.

Christmas can be a joyous occasion, abundant with food, presents and loved ones. But for people who have lost family members, who are homeless or experienced a tragedy, Christmas can be a difficult time. It's often not presents that make a difference, but ensuring people in need are given the opportunity to feel included

This Christmas 25,000 Australian families will be homeless. Nearly 30% of The Salvation Army's clients will not have a decent meal on Christmas day and 36% will not have social contact with others in this holiday season. The Salvation Army expects to assist over 100,000 Australians over the festive season - three times the number of people seeking help in December compared to any other month.

"The Salvation Army is doing all it can to bring some comfort and hope to as many people as possible this Christmas," said The Salvation Army's Dr Bruce Redman.

Dr Redman said that it is not just financial support that people need this Christmas. "Over 36 per cent of clients who responded to a survey we did in 2013 said they do not have regular contact with people. Loneliness is amplified over the Christmas season - so social support is just as important as financial support."

My family is small - it's just my parents and I. We've been very fortunate to always have lots of great food and wonderful presents at Christmas - never too lavish, but I've always felt lucky. 2012 was the first Christmas that my parents and I volunteered at a community Christmas event, and we have made this a yearly tradition.

We served a baked lunch and washed dishes at a community Christmas lunch at a Uniting church. The food was by head chefs from the local technical colleges. Each guest received a gift, and most importantly, they got to spend Christmas in company. It was such a happy atmosphere - both in the dining room and our volunteer assembly lines.

Some guests had mental illness, others were in financial distress. I spoke to widows and widowers, and also to a couple who had recently migrated to Australia from Sri Lanka. Some of the volunteers gave been doing these lunches for years, others came for the first time, just like us. I spoke to one young volunteer, in his late teens, who said he has a difficult family life and so volunteering at this event helps him to take his mind off his family on Christmas day.

169 people had a meal and experienced a sense of community because of that Uniting church Christmas lunch, and leftovers were sent to the police cells.

Michelle* from Melbourne said that her son, who has a disability, and husband attended a Christmas event run by Variety a few years ago. "The event included food, drinks, rides and Santa. Variety not only put on the event, but they also provided our son with a large bag full of xmas gifts", Michelle said. "It was wonderful to think that others would want to make our son feel special. It was great to know that there were people in the community that cared and and wanted to create something special for others." Michelle believes that this event was special because of the social inclusion, and because her son's disability was understood. "There was acceptance of disability and difference, and people could have fun without feeling like they were going to be judged for how they looked or behaved", she said

Please consider helping out a family less fortunate than yours this Christmas. You can drop off presents and food to various gift appeals, make a donation to the charity of your choice, or enquire at your local church or community centre about participating in a community Christmas event. Check out the Australian Charities and Not For Profits Commission charity register for a list of registered charities to donate to.

(All statistics provided by The Salvation Army, October 2013

Michelle's name is a pseudonym by request

Image description: two gingerbread men on a wooden board, surrounded by Christmas spices and Christmas tree leaves).

21 December 2015

It's ok to do nothing. I've given myself permission to do nothing this weekend. The weather has had an influence too. It's been too hard for me to do anything over this hot weekend. (And I've felt a little guilty doing nothing while Adam has been outside working hard the whole weekend.) I had intentions to do things - really, I did.

I'd planned to write - to finish all the drafts I have. I'd planned to source a frame for our wedding, so I could paint it and insert table places in the windows. I'd planned to tackle the mountainous bedrobe in the spare room. I'd planned to go to a store and buy a gift voucher - but instead I thanked the retail gods for allowing me to purchase it online. Instead, I organised the saucepan cupboard - retiring my old ones and washing my new fancy ones, did lots of washing and danced around the house in my swimmers, singing loudly to Taylor Swift.

I watched some Netflix too - indulging in some rubbish (Rock This Boat - a hilarious reality TV series about a New Kids on the Block boat cruise and their 3000 screaming 30 something fans), and some healthier stuff (Master of None - an insight into the lives of contemporary 30 somethings - so clever.) I sprawled out under the air conditioner - bliss.

I don't do nothing well. I have to be doing something! My version of doing nothing is often lying in bed bashing out pieces of writing, or listening to podcasts when I really should be asleep. Even in hospital I feel like I should be using the time to read a book or a magazine.

Adam and I played a mind game at the science museum last year - it showed how much we use our minds. The ball would move when we relaxed our minds, and stay still when our minds were busy. Adam found it easy to move the ball. I couldn't make the ball move as I was thinking of dinner, writing, the heat, my body, work.... I can't switch off.

This year has been a busy one. Exhausting even. I've taken two weeks of recreation leave, a few sick day, no break between my old job and new one and my travel to Sydney and the Gold Coast have been for speaking and blogging engagements - while feeling like I was on holiday, I was still "on". I think planning the Australian Ichthyosis meet and then running the guest posts for Ichthyosis Awareness Month in May left me feeling spent. I have those projects my all, and while the outcome was so wonderful, I might have suffered planning withdrawals and also sheer exhaustion. And wedding planning has been busier than expected - I'm relieved I am not going overboard with the details. And there's been the normal routine, too. Seeing friends, meeting deadlines, visiting shopping centres, paying bills, cooking meals. Rinse and repeat.

"There are two types of busy in my book. The busyness of life that is very real…school routines, after school activities, social lives, exercise and generally exhausting household chores. Then there is the busyness inside your head. This to me is the greatest concern. If you can’t empty your head of the busy then you will never unbusy yourself. Unbusy is totally a word, okay?"

She's right. It's been nice to unbusy myself - my head - by taking time to do nothing. I go on leave soon - and I hope to be relaxed going into the break, rather than taking the whole break to unwind.

It's ok to do nothing sometimes. Our bodies and minds are better for it.

How about you? Are you in a constant state of busy? How do you slow down?

16 December 2015

I know I haven't written much lately. I want to, and it's so easy not to. It's been very busy. But also I have a lot to say and I am mindful of not saying it all, all the time. I don't want to always be the voice, or seem angry at everything (because I'm not). I've always got drafts on the go, though. And I've got some time over the Christmas break to write.

Thank you to everyone who has read, commented and shared my writing. Thank you to the editors who have commissioned my writing - especially to the ones who love what they've seen on my blog and want to republish (and pay me!) on news sites. To those who have asked me to speak and teach because of my blog - I am so grateful for these opportunities. Thanks to those of you who contributed to guest posts. And thank you to the countless people who have written to me to tell me your stories - what a privilege it is to come to know you this way.

You all know so much about me. You've seen me grow up, make mistakes, come to know myself and find love. And you've given me so much support - always. Plus I've learnt so much through writing and researching. Sometimes my blog posts aren't the quality I'd like them to be, but for the most part, I'm very proud of the writing here. My voice has become stronger and I'm mucH more confident to voice my opinions. A lovely Bloggy birthday present is being named in one of Daily Life's top 20 stories of 2015. That story was originally a blog post.

I love that something I'm so passionate about, and constantly practice, has made a difference to many people. Because of blogging, my life is richer.

14 December 2015

One of the few reasons Adam and I argue is over taking Instagram photos. I'm a little bossy, you see.

"Please use my proper camera."

"I like this wall, that one is too dirty."

"Can you please take a photo of what wore to work? I really like it!"

"Don't reveal where we live."

"Please take more than three photos."

"Not yet, I'm not ready."

"Is my dress too short?" (To which he replies, "not short enough".)

"Have you sent the photos yet?"

And so on.

My love, he's so patient. So obliging. And I'm sure, like in the video, his phone is filled with photos of me.

He understands. This isn't vanity. This is what I do. He's ok with it. Even with the eye rolls.

Sometimes he will take photos when I'm not looking. Really unflattering ones. Ones when I am lying on the couch with my pyjamas on, floppy boobs and messy hair. He said he thinks I'm still beautiful.

Occasionally he'll send me one of the unflattering photos and I screech "when did you take that?". He tells me he snapped it when I wasn't looking, or when I was moving. Like this one (one of the more flattering ones).

Most of the time he takes photos on the run, and tells me to hurry up, we are late! I pile him with stuff I don't want in the photo. My bag...my sunglasses... He snaps anyway. He said he liked this action shot.

We get it right, and I post the photos once he's messaged them to me. He always takes them on his phone as mine gets Vaseline lens. Here are two successful ones.

He told me he's not one for photos. But then he sneaks into selfies. Like this. Cute!

Have you got an Instagram Husband or Wife? A selfie stick? Is your photographer as patient as mine? (Sorry for the influx of photos of me, too.)

03 December 2015

Australians will pin a blue and orange badge on their lapel, to show their support for inclusion and accessibility. Many will attend events (mostly organised by people without disabilities) just for the morning tea. I know - people have told me they only stopped by for the sweets. They'll hear people with disabilities talk, and for the most part, that speech will make a positive impact, perhaps even create meaningful change. Hopefully the speaker will be paid. Some people will feel uncomfortable by disabled people talking about ableism and inaccessibility - they're just attending to hear the Inspirational Stories. Some events will only feature figureheads - people in the disability sector or diversity stream of an organisation - speak about others with disabilities. Disability allies are encouraged to bake muffins, ice them in the themed colours and upload them to social media – to promote inclusion. (A muffin is delicious but it’s a big stretch of the waistline to call it inclusive.) The media will run with only one type of story – the inspirational. And I’m sure there will be silly games simulating having a disability – like sucking on a lollipop to hamper verbal communication.

Nothing about us without us, right?

I've sat through events where all sorts of euphemisms are thrown around - special needs, diffability, differently abled - even on this day, people (including those with disabilities) with are uncomfortable about the word disability. There's a great lack of pride in some pockets. There is surprise that disabled people are proud.

"This day is supposed to be about us. Instead, it's become about 'awareness' and everyone else - the congregate settings we are forced within, the industry called Disability Inc, Sam says.

"We don't need people to become more aware of us. We are here, claiming our spaces. We need the rest of the world to focus on how they're going to change to allow that to happen, to give us jobs, to help us uphold our human rights. And most of all, the day should be about Pride, disability Pride.

Until that happens, it is not our Day."

Sam and a dedicated team of activists have been doing important work in uncovering abuse in institutional and domestic care, ensuring the deceased and survivors are named and known via the White Flower Memorial. The White Flower Memorial website states "we collectively throw a spotlight on murder, violence, neglect and other practices which devalue the lives of all of us. We assert the right to life and dignity of the person under article 10 of the UN Convention on the Rights of People with Disability." This event, held last week, was far from the warm fuzzy morning tea people want and expect. The stories of the deceased are a sobering reminder that it’s not enough just to raise awareness one day a year.

Last year I gave a speech and was spoken over by a man who told me how he thinks I should feel. He told me how negative I was through the speech, and how important it is to be mainstream rather than marginalised (pitied rather than proud, perhaps?). He also told me that he feels the need to give me this feedback as a speech should go two ways. And to top it off, he made a rather indecent comparison to lewd criminal behaviour when empathising with what it's like to have a disability. I was taken aback by his response. I answered on my feet, to the whole audience. I said something like: "I think there is a perception that activists are negative when they share their and others' reality. The things I talked about happened to me. The statistics I quoted are real. I'm not going to gloss over them." This invalidation and speaking over me has happened a few times since that speech. (I haven’t inspired them enough.)

Fortunately I've been in and organised great events - sourcing speakers and speaking myself. Just this week, I spoke at a corporate event, listening to a proud Deaf man who spoke of the joy of being a part of the Deaf community, and an autistic man who's relieved he’s recently been diagnosed. I learnt so much about their communication styles and the reasonable adjustment they need to be the best workers they can be.

And tonight I'm doing a comedy piece in Quippings - a disability-led performance troupe. We are risky, sexy, funny and proud. And we are addressing real issues, making positive, inclusive change. This is how it should be.

This International Day of People with Disability, I hope for more than awareness raising and tokenism. I hope individuals and companies take committed action to tangibly improve the lives of people with disabilities. Don't just wear the pin today and do nothing for the other 364 days of the year.

30 November 2015

When I was asked to write this for Don't Dis My Ability, I had writers block. It came from realising me planning a wedding is just like any other bride to be planning a wedding. Love doesn't discriminate.

I will be a bride in March. Although my parents encouraged me to be anything I wanted to be, I never thought I'd be a bride. I tried dating for many years, but it was hard to meet a man who was ok with my severe skin condition – Ichthyosis.

But in just three months time, I will walk down the aisle in front of friends and family wearing a very traditional dress and declare my love for Adam, a kind-hearted, funny, handsome man who loves and cares for me as much as my parents.

When it was suggested I write about planning my wedding, I experienced writers block. Apart from procrastination, it took me a while to put my finger on it. Then, as I was completing bridal registry cards, I realised the reason.

It's because my experience planning a wedding, and my anticipation for the big day, is probably no different to my engaged friends who don't have disabilities.

Like them, I'm scouring Pinterest for floral inspiration. I'm emailing jewellers on my lunch break, compiling the perfect reception playlist (full of bogan Aussie rock, please!) and ensuring my hens night is phallus-free. I've been trying to exercise (read: buying a lot of active wear) to prepare my bridal body. That's counteracted by our cake maker friend offering Adam (my fiancé) and I sample trial wedding cakes each time we see him. And my fiancé and I are saving frantically. Weddings are expensive! But so exciting.

There are a few adjustments to make me comfortable on the day (lighting and heating in the venue, and a cover up for my arms), and a hairdresser that will make me feel beautiful, but more importantly, Adam and I want the venue to be accessible for our guests. We've got lots of friends with disabilities - and we want to make them feel welcome and comfortable. We are making a statement about marriage equality - in our ceremony - mentioning same sex couples, people of colour and people with disabilities - because sadly, inequality still exists across these groups. Even if our guests didn't have disabilities, I still think it's important to show we value accessibility, by choosing an accessible venue and making a statement about equality.

It’s often assumed loving relationships do not apply to people with disabilities. In my circle of friends, that’s far from the truth. Earlier in the year, I wrote a blog with tips for moving in with your partner. I shared the post on Facebook and the commentary below it made me beam. All of the comments were from my friends with disabilities, expressing their love for their partners and offered advice. They suggested things like creating rosters to share the housework, and writing love letters to surprise your partner. As cliched as it seems, the romance they wrote about was the same tummy flipping, heart bursting, lusty love that my friends without disabilities feel. Their love was diverse, proud and open. It made me so happy.

Outsiders often view getting into a relationship as the holy grail for people with disabilities. They see it as a big achievement, because disability is often portrayed as undesirable, unattractive even. Love is, in my experience, sometimes harder to come by because of disability, but not impossible. Parents hope that 'normal' will be their disabled child finding love and having a family when they grow up. My parents never wanted this to be my ‘normal’ – they encouraged me to find success in other ways, and I did. When I stopped chasing the relationship dream and came to love myself, I found my love.

My writer's block disappeared when I thought of all the things I love about love - they're universal.

Finding someone you love and who loves you back is the ultimate validation.

Love to me is finding a person who doesn't look past disability but sees it as part of my identity. Love between two disabled people or a disabled person and able bodied person is something to celebrate. Not because it's an achievement or that they have somehow overcome the odds but simply because it is beautiful.

Love is not less or more deserved because of disability. Love for us is not different to love for our able bodied friends. It's not something to be surprised about either.

Love is love.

And I can't wait to declare it to Adam in front of my family and friends next year.

23 November 2015

After my amazing day on Friday (see my Facebook or Instagram for details - and stay tuned for a little wrap here soon), I've not been so well over the weekend. I'm tired, my skin is a little sore on my ribs and I feel sick in the tummy. I've been in bed for a lot of the weekend. Travel, socialising the heat and a long day has taken a lot out of me.

I've put all writing on hold and am just focusing on getting better for work this week.

Life's great, but not all the time. I am very mindful not to present a curated life online. I do live a very full, busy and active life, which may seem out of the ordinary for someone with a chronic illness. I am aware of that privilege.

Here's the reality, when I'm not doing all the amazing stuff: Much of my writing is done in bed. I wear pyjamas a lot. My house isn't very tidy. Sometimes I get takeaway. And I nap a lot. It's all part of self care so I can get everything I want to do done.

Anyway, just checking in to say I'm here but a little under the weather. Hope you've had a good weekend! ❤️

17 November 2015

Gosh. I'm so busy I've had very little time to write here. Regular writing should commence soon. I've got so many words inside me. Today I wanted to do a quick post - about a two year anniversary.

It's two years today since Adam asked if he could be my boyfriend. He's grown so much since we've met - his confidence has soared and he's started his own business. We aren't celebrating together tonight - I am a handyman widow (like a cricket widow). He's assembling someone's furniture in Northcote. I'm so proud of him. ❤️

09 November 2015

Last week was a big one and so this past weekend has been spent resting. I had a nasty fall midweek, which has left me in pain for days. I took a tumble while walking out of my manager's office - tripping on a chair leg and smacking my knee and hand into the metal edged door. I immediately sat down, laughing it off, then applying a cold compress to my knee and elevating my leg. Overnight, my body stiffened and I woke up with a very sore foot in addition to the other injuries. The skin on my knee healed quickly as always, but it's my joints that feel rickety.

Adam and I were like ships in the night - me at concerts and him at Cubs and handyman jobs most of last week. Dinners were eaten out or on the run. We saw each other briefly after 10.00 pm on some nights, for a quick talk about our day and a mandatory cuddle. I missed him a lot. When I told him I fell, he rang me straight away, asking if he needed to come home. I said I'll be fine. He got home late, and straight away removed the quilt to look at my leg. Then he applied antiseptic cream to it. I hadn't done so because I feel tougher than my skin looks. It'll be right, I said. He wanted none of that, showing me such love in looking after me. I fall for him - in a safer way - every day.

This was my first big fall since I fell down the stairs in 2012. I cut both knees then. I'm clumsy. This time, three years on, it hurts more to walk. Each time I take a step downstairs, my joints ache. I went to see Fleetwood Mac a second Tim (!!) and when I got home, I felt like I'd been for a run. Adam has helped me stretch my legs out. I feel less sore, steadier.

When I was looking for a place to live in Melbourne, I had a fall After a long, hot day of househunting. Mum and I were so over it, and I wasn't watching where I was going. I tripped over the pavement, and Mum couldn't stop laughing at me. I did not see the humour in it at the time. Nor did I see it when I suddenly fell and did a drop roll on a flat source while on holidays in Tasmania. So. Clumsy.

Mum fell over a few months ago - she fell chasing a chicken. Skipping over in the mud, she did the splits. She used to be a very good gymnast in her teens and 20s. But that night in the chicken run left her bruised, swollen and in need of an ambulance.

My Dad tried lifting her up but she couldn't move, describing herself as dead weight. She had us in stitches telling us about how Dad asked if she had put on weight. "This isn't the time to comment on my weight", she scolded him!

It's funny how as a child, falls happen so often. We fall when we are running and playing. Scraped knees were a reminder that we were having fun. We bounced back quickly, agile limbs and a rush to get back to playing. But as an adult, falls frighten us. They make us unsteady as we walk over pavement cracks weeks later. And we feel so silly at our clumsiness.

Have you fallen down lately? How long did it take you to feel steady again?

05 November 2015

I've got a few doppelgängers. They span generations - some are 20, 30 years older than me, and others are toddlers. Genetic similarities thread through strangers across the world, giving us a sense of knowing and belonging, even though we might not know each other.

We all bear a strong resemblance because of a severe skin condition called Ichthyosis. It's equally intriguing and comforting for us, and confusing for others.

I was at a party recently, catching up with old friends and making new friends. One friend introduced me to her friend, whose eyes immediately lit up when she saw me. She recognised me. Due to my red face, I'm easily remembered, and sometimes (now more frequently) recognised because of my writing. It is quite exciting! She told me she'd seen me on a friend's Facebook that week, and was adamant I'd been in Brisbane. I hadn't - though I was on the Gold Coast at the time. She finally found her friend's photo - her friend was indeed with a female with a red face. But it wasn't me. Her friend had met my nine year old friend Lucia, who also has Ichthyosis (the same variation as me).

I got a little frustrated and told her that I know she didn't mean harm, but I think there can a problem with people without disabilities seeing one person with a disability or facial difference and thinking they've seen them all. Media portrayal of disabilities seem to make people experts! She understood where I came from and apologised. I also told her that my little friend is nine, and I am 33! (My beauty regime of paraffin and natural facial peels leaves me looking super youthful!) And of course this conversation inspired me to explore the topic more, and so here I am.

I encounter being mistaken for others with Ichthyosis a lot. It's a rare condition (20 per million), and patients with the Nethertons Syndrome (mine and Lucia's type) and Harlequin types do look very similar. Sometimes people stop me to tell me they've seen me on TV - and I smile and say I was on Channel 31's No Limits for three seasons - very pleased someone has actually tuned in! No, they correct me. They've seen me on Embarrassing Bodies or Medical Incredible. That's not me, I tell them. But yes, they've seen me and my sister, and how much I scrub my skin. And they ask me when I moved to Australia, because the show's subjects are English?. And I tell them again, that's not me - I'm an only child and am Australian. They shrug and tell me they know so much more about Ichthyosis thanks to these shows, and I tell them I would never appear on a show like Embarrassing Bodies "But you look just like them", they continue. Yes. Yes I do.

Professor Ingrid Winship, Professor of Adult Clinical Genetics, University of Melbourne and Royal Melbourne Hospital tells me the reason patients with genetic conditions look similar is a complex one.

"The DNA instructions that cause the health issues may also have an influence on the development of our facial structures. We are able to recognise faces from an early age, and it is possible that the relationship of facial features ie how widely spaced one's eyes are or the shape of the chin, which people with some genetic conditions have in common, that create a "pattern" which is easily recognised", Ingrid says.

My new friend from the party can easily be forgiven for mistaking two people with Ichthyosis. There is a genetic explanation that has taught me not to be so defensive when encountering these doppelgänger questions.

"A child with Harlequin Ichthyosis, for example, may look more like another child with Harlequin Ichthyosis than their own sibling", Professor Winship continues.

When I've met others with Ichthyosis, I've been struck by how alike we look, and how different I look to my parents (despite Professor Winship telling me I look a lot like my Mum). It's like looking into a mirror, despite any age difference. We have similar face structures and hairlines, a slight build, and I've been told our pinky fingers and toenails are curled. It's like we are one family. Parents of children affected by the condition tell me about the cute instances of their child seeing another child and thinking it's them. It must be such a relief for them to see others like them out there. It has been a relief for me. It was amazing to see a room of similar faces at the Australian Ichthyosis meet earlier this year.

Professor Winship says "Being a bit technical, there is a genetic effect recognized called pleiotropy- that a change in one single gene can cause multiple effects on the body's health and appearance. This is seen in Marfan Syndrome, where the eye, the heart and the skeleton may all be affected by a single genetic change."

Prue Hawkins, who was a close friend of the late Stella Young, has often been mistaken for Stella. They have the same disability, both had a nose and lip ring, and they shared the love of knitting and dancing.

I asked Prue why she thinks the confusion happens. "I think people see the wheelchair, then a small female in it and just assume we are the same person. Even though for years I had long blonde hair and hers was short and a variety of colours", she tells me.

Prue also relates to my "seen one, seen 'em all" theory.

"Stella and I used to joke that there could only be one crip in the village (circa only one gay in the village from Little Britain)", Prue says. "If you look at photos of us together, we really look nothing a like. But again, people see the wheels and assume we are the same person.

"It started as a joke between Stell and I, but in the end got so frustrating. Because heaven forbid there be not one, but two balshy, powerful and capable women in this world who were willing to "stand up" for what they believed in (pun intended)."

I first came to know of Prue when she appeared on SBS Insight, discussing issues around disability and employment, and a fellow guest mistook her for Stella. It was amusing, but also detracted from an important issue, and raised another - the perceived homogenisation of disability appearance.

The Insight guest couldn't get past Prue's resemblance to Stella to address her by her correct name.

"I was mainly embarrassed for him if I'm honest. He said he was so excited to be meeting Stella, and I kinda felt bad for him that I wasn't her. I think he was so nervous about being on TV, so I just let it go. I didn't actually correct him, Jenny Brockie (the host) did".

Prue believes the idea of "only one crip in the village" can be reduced through increased exposure of people with disabilities. "The more PWDs are out there, in the community and living a normal life (whatever normal is), the less of a novelty act we will become."

There is still and surprise and inexperience in talking to people with disabilities, and being mistaken for someone else is tiring. But the genetic explanation helps me understand why this is a common occurrence. Our brains are wired to recognise similar characteristics - genetic patterns. And while I (and Prue and many others) think it's important to take a few moments to think before you speak to disabled people, taking a step back from the personal experience has made me realise what an interesting phenomenon this similarity of appearance is. I can't speak for others with Ichthyosis, but I think it's pretty amazing I have a whole 'family' out there who truly shares some of my experiences of what it's like to look different.

"What a TREAT to finish the week with your piece. As you know I'm a big fan of your writing but this is definitely one of my favourites. It's SO interesting, heartfelt, and well researched. I really liked the way you told it -- and the reflection of having "a family out there who share your experience of what it's like to look different". What a wonderfully powerful note to end on."

03 November 2015

I used to do concert reviews on my blog. I haven't done one in a while. When I got home last night I wrote a short one for Facebook. I wanted to record it properly to look back on. So here it is.

Last night I experienced one of the best concerts I've ever been to. Fleetwood Mac. Wow. A concert I dreamed of going to since I watched The Dance in 1997. I feel so lucky to have been raised on their music - listening to them on record and cassette from when I was very small.

The music tonight was outstanding. The professionalism, talent, engagement with the audience, energy - amazing. Although we had seats in the nosebleed section, the band treated us like we were front row.

My highlights:

- Stevie Nicks' tambourine, and her pep talk about "reaching for the stars (stores) and following your dreams" before Gypsy. Landslide was perfect.

- Christine McVie's voice. Her golden honey voice. And her gratitude to be back playing with the band. Songbird was beautiful.

- Lindsay Buckingham's anecdotes about the band were interesting. He has so much energy. Big Love was a stand out.

- The tinkles Mick Fleetwood made on the glass. His charisma. Those red shoes. He must have a great heart to play a three hour set on the drums.

- That John McVie is in good enough health to have toured 110 shows and counting.

- The confirmation that the past is in the past and the band is together now. "The Mac is Back", Mick Fleetwood said.

02 November 2015

Back on a rainy Saturday evening in August, I was travelling home on a train. I'd just been at Quippings rehearsals, fittingly discussing disability politics, including the behaviours of over niceness and pity thrust upon disabled people. I was looking at social media on my phone, not speaking and not in any need of assistance (I would ask if I was - and that's rare). Suddenly I was faced with this situation:

Stranger on train: "excuse me, would you like a wet wipe?"

Me: "no thanks."

Stranger: "I think your face is a bit sweaty and you could use one."

Ahh they mean well, don't they?

So I wrote about it on Facebook. Those exact words actually. I wanted to show I was amused and exemplify the audacity of strangers. This is what I call intrusive behaviour, no matter how well-meaning their intentions were.

What followed, and even harder to take than the initial intrusiveness, was the responses from friends and acquaintances. They argued that I should educate at all times, and that kindness was a motivator.

While I do educate where I can, I also have the right to decide when I want to educate. Most times I just want to get on with my day. There have been suggestions I should carry cards with an explanation about Ichthyosis, and hand them out to the curious. Depending on how they ask or approach me, I tell them I blog and give them a business card. I don't put anything about Ichthyosis on my card because I don't want that to be defining. And I've also seen how people react to info cards, and it's not positive.

Then there's the kindness thing. A friend said this woman on the train was probably being kind, and she hopes my response doesn't put her off being kind in the future. I totally see this point, but I think people need to consider whether a disabled/sick person is really in genuine need of assistance, or whether they're just being nosy themselves. I would have preferred it if she had said hello, and then politely asked about my skin.

Many told me they have been raised to offer help to people with disabilities. There are so many times I've seen people genuinely in need of assistance and no one stops to help. But often assistance is offered when we are just doing average things. Like eating or reading or using an iPhone to read the internet. Kindness is lovely, but kindness in this form can be attached to assumptions. These assumptions of helplessness that are rude and awkward and pitying. And it's so hard to explain that to people who might not have encountered this in any form.

This is such a difficult issue for me to discuss. Sometimes the comments from others around this topic are harder to digest than the comments received from strangers. It makes me want to censor myself. It's judgmental and demanding at times. I also think that for people who don't encounter these kind of questions on a regular basis, it's easy to dismiss this as caring or curious. Many friends with disabilities and facial differences get it - sharing stories of intrusiveness that I relate to. I read this great blog about the disability voice - the one we put on when we are offered assistance.

I recall Stella Young saying how a lady offered her help in an airport, and Stella asked "help with what?". She didn't need help reading a book. And the lady responded with "I told you all disabled people were rude." And so it's these assumptions about the help we need or the bad lives we lead, and also our responses that create this cycle of further assumptions about our attitude to this help. Assumptions that disabled people are ungrateful and rude.

Similar to Stella's experience, I once had a woman in a London theatre ask if I wanted a drug to stop me scratching. It was dark, she couldn't see me well, and obviously we did not know eachother. She said she was a doctor. How could I accept that? - she's a stranger to me. I'm allergic to some medication and I wasn't about to rattle off my allergies in whispers during a Queen musical. "I was just trying to help", she sighed. And so my declination of her kind offer made me seem ungrateful.

These questions put us on the spot. They are loaded with the assumptions that we need help (and perhaps pity) when we are really just getting on with our day. And they come with the expectation that it's our job to educate them, and be polite - Every. Single. Time.

It's tricky to respond to well meaning offers. If we decline, no matter how politely, we are seen to be rude, creating a bad experience for someone interacting with a person with a disability. And if we really do need help, like a seat on a train or intervention in an abusive situation, how can we ask for it? And I do try to be friendly, because that's in my nature - when interacting with anyone about topics unrelated to my appearance.

In our Quippings show, we did a word score where we each said a word or phrase related to a theme around disability. One theme was over-niceness - showing examples of well-meaningness. Jarrod's phrase, said with a frustrated tone and gesture, was "I was only trying to help". And that parody is so true. When we talk about these experiences of well-meaning people trying to help us, people respond with "they were only trying to help". When I told the wet wipe woman on the train that it was rude of her to assume things about my appearance, she said she was only trying to help. And so, supposedly, I framed her experience with disability as a bad one.

There's a difference between being uninformed about a disability and intrusiveness and rudeness towards appearance. That comes down to politeness and how people enquire. Start with hello. Don't just launch in. And being mindful that if someone looks different to what you're used to, it probably means they've been asked time and time again about their appearance. (I really liked the comment Stella made in an article - "It doesn't matter how we got like this. Really. If you're just sitting next to one of us on the train, or taking our order at a cafe, you don't actually need to know.")

Strangers' well-meaning, kind intentions are rarely malicious, but even so, it's rude, presumptuous and intrusive (and tiring). We are not here to satisfy someone's good deed or be their conversation starter.

Kindness begins with hello. And then, maybe, you can ask me if I need help.

(Image from I Laughed at the Crippled Girl Facebook. Visit Ally Bruener's website.)

29 October 2015

Last month I took a Facebook break. I felt overwhelmed - with online and offline life. I just wanted to escape for a while. I felt suffocated, watched, pounced upon at times, argumentative, lost for and full of words simultaneously, and tired. So tired.

(I want to write about activism burnout in depth soon, but I'm still tired.)

I couldn't pretend that everything is ok when it wasn't.

As an online writer, I put myself out there, addressing (what I and others consider to be important) issues and giving a lot of myself.

These recent months have been really tough and I needed time out, away from the noise, criticism and seemingly never ending issues. It's sometimes thankless and met with a lot of misunderstanding about me. I know I don't have to 'take on' every cause, but when issues around discrimination and exploitation of appearance affect people in my community, they affect me.

It seems relentless - ableist language, lack of solidarity from a support group, misuse of our photos for exploitation, the demonisation of those who dare to speak up, photos of naked children in Facebook groups because people are desperate for medical answers, the misunderstanding of activism from friends, awful behaviour from other bloggers, the high expectations to be on/polite/educating/putting up with at all times, scams to tug at heartstrings and to open wallets...

It's not all bad though. I love what I do. I just can't do it all.

It's funny how words and pictures we scroll our thumbs over can weigh us down. They only exist virtually, but crawl into our hearts and minds, chipping away at our emotions. Tragedy, issues, events and opinions can be burdensome.

During the week off Facebook, I reconnected with life. I read books. Wrote. Watched TV. Caught up on chores. I also was blissfully unaware of all online outrage. When I logged back on, I saw one of the most shared stories was an inspiration porn one, about a disabled man in McDonalds. I was so glad I missed that!

I'm proud of my online writing. I try to work hard at it, research well and talk to lots of people so I can learn and grow. During that week off, lots of friends emailed or texted asked where am I?, concerned and hoping they'd see my musings again soon. It was really nice to know that I (and my writing) was missed - I surely missed my Facebook friends. But the thing that made me smile the most was when a friend texted me asking me to send her a daily photo of what I'm wearing, because she missed my outfits the most.

That week I'd unplugged was so refreshing. My world didn't end. I still kept up with the news, via news websites and Twitter, selecting what I read on my own terms. I didn't get sucked into circular comment wars. When I reconnected, I wrote many words for long form pieces that I'm proud of, and have been even more considered about how I engage on Facebook. I'm not clicking on every link to outrage. If I see an issue that I could weigh in on, I consider the impact it will have on me and the impact I could have on it, and walk away if needed. And those decisions mean I feel lighter.

(This post is for a little group project about plugging in and being unplugged, inspired by Erin from Design for Mankind, and led by Pip Lincolne. Read others' pieces and join in via Pip's blog.)

26 October 2015

The thing about looking different is that people tell you what they really think. Not all of what they say is malicious - it's a case of unthinking behaviour, personal discomfort/projection about someone else looking different or no filter between brain and mouth.

These are three conversations I've had recently.

Lady at bus stop, pulling disgusted face: "Ughhh have you been burnt."

Me: "No. I haven't been, I was born like this. There's no need to pull that face at me."

Lady: "I'm sorry. But you're very attractive though. Very attractive even though you look like you've been burnt."

A couple of months later:

Man on tram, laughing: "you've been covered in blood!"

Me: "No, born like this. Not a Halloween costume."

Man: "sorry, I bet everyone thinks it is."

(I do believe this idea might stem from scary face at Halloween.)

And then, in the same week:

Lady in African restaurant, waving her arms around her face: "what's the significance of this, your face?"

Me: "what do you mean?"

Her: "is it traditional African?"

Me: "it's traditional genetics."

Her: "I've seen pictures of people in Africa who wear makeup like that."

Me, laughing: "I'm sure you have. That's one of the strangest questions I've been asked. And it's rude to just come up and ask a stranger about their appearance."

Her: "Sorry. I don't think it's rude. I was kind of hoping it was traditional makeup. I love it."

Adam: head in hands, bewildered.

(I have South African heritage. Never worn traditional dress.

I was dumbfounded. Like I'd black up to go to an African restaurant (even though I'm part South African, I don't appear that way, nor accentuate racial features). So strange.)

I'm not even making this shit up! These microaaggressions happen to me a lot. I acknowledge they're not discriminatory or upsetting (for me). Others might take these encounters to heart. But they're tiring. And fortunately, laughable (and blog fodder).

I just don't understand how people think it's polite behavior to say stuff like this. And then the conversation gets really awkward because they've interrupted me to discuss my face and how they feel about it. And if I call them out on their rude behaviour, they might perceive all people who look different or with a disability as unapproachable. So ultimately I (perceivably) end up being the rude person because of assertion.

Outsiders (and even insiders - those with my condition) see these encounters as an opportunity educate the ignorant. And while I agree with educating, I maintain that we don't have to be *on* all the time. But then it's assumed that because a number of people welcome that, we ALL do. That we are all ok with questions and comments and education 24/7 if it helps the greater good.

I also believe that people who make such comments - particularly about an appearance being akin to a Halloween costume or feeling sad for someone for looking "unfortunate" might be projecting their own insecurities of what it might be like to look different.

I'm not sure of the response that people expect me to give to make them feel comfortable. It seems that being honest about born like this isn't enough to evoke empathy. It seems that me calling out their rudeness isn't enough for them to realise they are, in fact, being rude.

Are boundaries blurred because of curiosity - and when people are curious, they're not rude, right? Does social media make people feel they have the right to offer an opinion on everything, even in person? Or is it just a case of not engaging the brain before the mouth?

I've discussed the issues of intrusive behaviour and unsolicited comments and questions so much on this blog - and I still have no answers (and still get people telling me I should expect this, and that it's my job to educate all the time). Sometimes I find myself in the most bizarre conversations - defending my appearance and setting someone straight about whats polite behaviour. All I can do is laugh.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.